Biobank governance: heterogeneous modes of ordering and democratization

H Gottweis, G Lauss - Journal of community genetics, 2012 - Springer
The great interest in biobanks, the related, substantial investments, and the expectations
connected with them raises the question of how to explain the relative successes and …

Prenatal whole genome sequencing: just because we can, should we?

G Donley, SC Hull, BE Berkman - Hastings Center Report, 2012 - Wiley Online Library
Whole genome sequencing is quickly becoming more affordable and accessible, with the
prospect of personal genome sequencing for under $1,000 now widely said to be in sight …

[图书][B] Information ethics: Privacy, property, and power

AD Moore - 2005 - books.google.com
This anthology focuses on the ethical issues surrounding information control in the broadest
sense. Anglo-American institutions of intellectual property protect and restrict access to vast …

Ethical and legal aspects of cancer genetic testing

K Offit, P Thom - Seminars in oncology, 2007 - Elsevier
As a result of the increasing effectiveness of cancer screening and preventive interventions,
ethical issues, as well as legal liabilities, are increasingly associated with cancer genetic …

Disclosures of Huntington disease risk within families: Patterns of decision‐making and implications

R Klitzman, D Thorne, J Williamson… - American Journal of …, 2007 - Wiley Online Library
Patterns of disclosure of Huntington disease risk and genetic test results among family
members are important, but have been underexplored. We interviewed 21 individuals in …

[PDF][PDF] Um caso de discriminação genética: o traço falciforme no Brasil

C Guedes, D Diniz - Physis: Revista de Saúde Coletiva, 2007 - SciELO Public Health
Este artigo discute um caso de discriminação genética envolvendo uma atleta brasileira de
voleibol identificada como portadora do traço falciforme. O traço falciforme é uma das …

Epigenetics and child psychiatry: ethical and legal issues

CR Thomas - Behavioral Sciences & the Law, 2015 - Wiley Online Library
Epigenetics has the potential to revolutionize diagnosis and treatment in psychiatry,
especially child psychiatry, as it may offer the opportunity for early detection and prevention …

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

PM Saukko, SH Richards, MH Shepherd… - Social science & …, 2006 - Elsevier
Policy makers have suggested that information about genetic risk factors, which are
associated with low risk and for which preventive strategies exist, should not be considered …

[HTML][HTML] Genetic 'risk carriers' and lifestyle 'risk takers'. Which risks deserve our legal protection in insurance?

I Van Hoyweghen, K Horstman, R Schepers - Health Care Analysis, 2007 - Springer
Over the past years, one of the most contentious topics in policy debates on genetics has
been the use of genetic testing in insurance. In the rush to confront concerns about potential …

[HTML][HTML] Genetic research: the role of citizens, public health and international stakeholders

P Fedeli, C Casella, C Buccelli… - The Open Public …, 2019 - benthamopen.com
Background: Genetic research has become an indispensable instrument for medical
research, and the subjects involved have both divergent and convergent interests. Objective …